News

Apr 28,2017

The need for more options: Sandra Zelinsky's story

Crohn’s and Colitis Canada is conducting a nationwide education campaign underscoring that treatments for Crohn’s and colitis are not one-size-fits-all, and that Canadians living with these chronic diseases need more options. Sandra Zelinsky lives with Crohn’s disease in 100 Mile House, British Columbia. Here is her perspective.

I was one of 4,500 Canadians who wrote a letter to my elected representative earlier this year advocating for a ‘No Forced Switch’ policy regarding medications for Canadians living with Crohn’s disease or ulcerative colitis. In light of the upcoming election in British Columbia, it’s even more important to press this issue now.

In BC, changes to government funding models could force patients to switch from their successful medication to a lower cost alternative. This is a scary thought for people who live with chronic diseases like Crohn’s or colitis. As the letter I wrote stated: a drug that works for one might not work for another, and it sometimes takes several years of trial and error to find one that works. For patients who have found a successful treatment option, they should not be forced to switch for cost reasons alone.

I have been living with Crohn’s for 24 years. I’ve been on several medications and undergone numerous surgeries. A few of the medications have worked amazingly but most of them were unsuccessful. My disease state constantly evolves, and as it changes so do my medical needs. Having more and new options to choose from is integral to maintaining hope for continued remission. This is vital for individuals with chronic diseases. Being in remission means we can live an active, productive life, keeping us out of emergency rooms and avoiding further surgeries.

My mission is to bring a collective patient voice to health research. I have been working as a Patient Engagement Researcher for the past five years. Patient-centered care is a concept I advocate for and has taken centre stage as a concept nationally. However, mandating patients to give up a successful medication for cost reasons alone would be contrary to this. Patients and their doctors need a shared decision making process without undue influence.

If you agree, please visit action.crohnsandcolitis.ca to submit a letter to your local lawmaker. We need to make sure British Columbia’s incoming administration knows that individuals with Crohn’s or colitis in this province, and their families and friends, support a patient’s right to stay on a medication that has helped them achieve stability and that works best for them.

Quick FactFaites en bref

Canada has among the highest incidence rates of Crohn's and colitis in the world.

1 in 150 Canadians lives with Crohn’s or colitis.

Families new to Canada are developing these diseases for the first time.

Incidence of Crohn’s in Canadian kids under 10 has doubled since 1995.